Moms on Monday #12 / Anna from OH

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Happy Monday morning fellow families of glorious children who happen to have CVI,

This morning I am so glad to have permission to share the words and the works of a mother who has helped lay the foundation of the Pediatric CVI Society over the past few years.  She has made great strides in raising awareness about CVI in her local community through her creative fundraising methods. In addition, she and her oldest daughter, Olivia, have been active in changing societal perceptions of children with special needs.

Anna from Ohio is the mother of three beautiful, energetic children and a RN who teaches student nurses.

In 2013, Anna started a blog, Hope She Smiles (http://oliviacansmile.blogspot.com) to chronicle her family’s experiences after her daughter, Olivia, was born.  Anna gave me permission to repost some of her inspiring blog.

Thank you Anna and Olivia!

From September 2013

“Take her home and hope she smiles” was the quote from the Neonatalogist the day after our sweet Olivia was born. 

The question that I’ve been asking myself over the past week is, “Where do I start?”

Usually the best place to start is at the beginning, but historically I do not follow the path that is paved. In an attempt to answer questions that I am frequently asked by other parents of children with CVI is, I will focus on the present with the past sprinkled in.

In August of 2007, we didn’t know what Olivia’s future held. We heard news from the NICU team at West Penn Hospital that would change our life forever. After suffering seizures and apnea 12 hours after birth, she was life-flighted to Pittsburgh. Her diagnosis was massive stroke in utero, cause undetermined.

What did this mean for her, her development, and her quality of life? We had so many unanswered questions. As a nurse myself, I struggled with understanding what this meant for a newborn. I knew in that moment that I was not acting as a nurse, but as a mother. A mother? I had only been a mother for 24 hours and I didn’t know what I was supposed to do.

SO the present…Where is Olivia now?

With the help of Early Intervention; Occupational, Physical, Speech, Vision therapies, follow up appointments; and a new appreciation for special needs children we were on our way.

She is currently in Phase III of the CVI Range and I know all of the above, plus other things that I will be mentioning in future blog posts, have been instrumental in getting us to this point.

Her main diagnosis resulting from the stroke: Cortical Visual Impairment (CVI). Luckily we were connected with Dr. Christine Roman-Lantzy from the Pediatric View Program when Olivia was only a few days old.

(Dr. Roman) has taught us that the focus should be on her vision, because it CAN improve. This statement gave us extreme hope and determination.

Olivia is in Kindergarten now and is a social butterfly. She is extremely happy and energetic. She can not only smile, but learned to walk, run, jump, ride a bike with training wheels, swim with a life jacket, horseback riding. We have even taken her ice skating.

Our approach to her and her diagnosis is “Let’s try it” Sometimes it is a success and she surprises us beyond belief and sometimes it fails and we vow to try again at a later date.

I believe our nontraditional approach has led us to where we are now.

From September 29, 2013 post entitled “Hope”ful

“Hope” she smiles…

The word hope was a word I used often in my life previous to the birth of my daughter:
I hope…we win the game.
I hope…I pass my test.
I hope…I make a lot of money.”

“Hope” now has an entirely different meaning. My outlook has changed since my first 30 years.

It all changed when I heard those words, “Take her home and hope she smiles.”

Hope has given me the drive to seek out interventions and modalities that will improve Olivia’s life. It has given us strength when the road that we are on proves to be challenging and frustrating. It has secured my belief in the blessings of God.

Hope reminds me that no one is perfect, we all have challenges that we face. I am proud to be helping Olivia meet those challenges head on.

Hope drives me to find a way.

Hope doesn’t come without disappointments. I hope for her to see, talk, read and write like all the other kids. I hope for her to make lasting friendships. Hope-fully these accomplishments will just take a littlemore time.

Lastly, I need to mention what drives hope. What is the fuel that gives us hope? Only one word…LOVE

From September 2013 post A Whole New World

My occupation is an RN. Currently, I work as a course instructor at a school of nursing. My job is to educate future nurses. I spend hours preparing objectives, lectures, exams, quizzes and teaching on the clinical unit.

I admit that I feel guilty that I devote so many hours of the day educating others when I have a child at home in need of learning a basic function–sight.

I am concerned when I send her off to school will she be learning in an atmosphere and a way that CVI children need to learn.

I have to somehow learn to let go and entrust other people, other professionals, to do their job.

But do they really know about CVI and all that it entails? Are they good enough for my child? I believe every parent feels this way regardless of the situation.

I do understand how crucial these early years are in the development of her vision. It can improve. But how?

Traditional methods used for visually impaired children to learn do not work for children with cortical visual impairment. The educators need to realize this and be able…no, willing…to adapt her learning appropriately.

So my goal is to find that way. 

Bridging into Phase III on the CVI Range is a miraculous happening for my sweet Olivia. But the road through phase 3 seems to be a very complicated one. One that even the experts in the field don’t know how to conquer.

So I accept that challenge. I vow to find a way. My goal is for Olivia to reach a 10 on the CVI range. A 10 means that she functions as a child with no visual impairment would function. Why not? Why not attempt to reach for 10?

Remembering back to our NICU days about a week after Olivia was born, I remember one of the neonatologist saying to us, “Reach for the stars. If you miss, you have lost nothing.” This became our approach to Olivia and to her future.

Anna was instrumental in raising the funding that allowed the Pediatric CVI Society to achieve non-profit status.  Anna and Olivia have done some very creative fundraisers.  Even Olivia’s friends have risen to the challenge of supporting the PCVI Society.

In 2015, Anna’s efforts were recognized by the PCVI Society.  She was the first inductee to the PCVI Society Hall of Fame.

President Dr. Richard Legge said in his remarks, “Without ever being to a meeting, she dedicated herself heart and soul to making PCVIS a reality.”

I loved her speech about fundraising.  I think it resonates for many of us.

We fundraise for Olivia for a better future. I have a confession to make… The fundraising was completely self-serving.

I want better access to pertinent information about CVI. I want access to the professionals in the field. I want to know what the newest developments and research shows regarding CVI. I want to know the best interventions that can be used for children with CVI. I want it for myself and others in my place.

From the beginning of this journey I have been hungry. Hungry for knowledge, like most of you here. Parents, teachers of the visually impaired, speech therapists, occupational therapist, physicians, ophthalmologists… we are all want to be fed CVI knowledge. This society can feed us.
To start fundraising you first have to be willing to go out on a limb, get out of your comfort zone. Ask for donations. It can be scary, but jump in. We would jump into a pool to save our child if they are sinking to the bottom of the pool. We wouldn’t think twice. Jump in for our children. Save them.
Second; share your story, make a connection, and open up. Open up the dialogue with others about what CVI is. Keep your donors in the loop. Keep them informed of the ongoing fundraising, the intent and goals of the society, and the mission statement.
This past year, our supporters donated to our cause in good faith. I asked for donations to a Society, that wasn’t even a society…yet! And they did. The American Cancer Society started somewhere. This is our starting place.

Some of our examples of fundraising include a lemonade stand, an apple cider stand, thirty-one fundraiser, Jamberry fundraiser, Arbonne fundraiser. Other donations came from a fundraiser from Olivia’s elementary school, my co-workers that took up a collection for Christmas, other anonymous donations, and those that donated through the go fund me page. Don’t discount small fundraisers because they add up. If we all participate in fundraising, this society can grow even stronger and even bigger, helping more children with CVI.

 

Did she smile?  Yes!  And she hasn’t stopped!

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Adventures in Advocacy / Anger & Courage

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Hope has two beautiful daughters; their names are Anger and Courage.  

Anger at the way things are, and Courage to see that they do not remain as they are.  

-St. Augustine of Hippo

I heard this quote during a presentation a couple of weeks ago.  I really needed it this week.

It was a week of preparation for the next round of IEP meetings for my daughter.  As is the new (ab)normal at times like this, I feel overwhelmed, underprepared, and anxious about what comes next.  Every time we go over a new report, we have to compare it to the old reports and I am reminded of what I didn’t know then and then I wonder how much I just don’t know now.  It’s very busy in my head right now.  Reading over past notes and goals I disagreed with leave me frustrated.

I feel like a clenched fist with hair.

(And, nothing else gets done.  Laundry?  Groceries?  You mean we still have to wear clothes and eat?  Haven’t you people done that enough already?  There are reports to read, questions to ask, and schools to visit, dang it!)  

Thankfully, it was also a week in which I was able to participate in a conversation with a group of mothers and a dynamic TVI.  These ladies are determined to make 2018 the year we DO something about CVI on a grand scale here in the U.S.  Listening to the passionate ideas coming from them made me smile and left me with more than a little more optimism than I had that morning.

Now, I feel like a clenched fist with hair and optimism.

This past week, while preparing for the uncertain transition facing my family, I also found myself impressed with the resolve of the CVI families’ growing efforts to raise awareness and to change the current systems of service for our children.

You could say I was living between Hope’s two beautiful daughters if you wanted to be particularly cheesy and need to find meaning in everything you read or hear.  I am particularly cheesy.  I do obsessively look for meaning in everything I read or hear (I wrote the St. Augustine quote on my hand so I wouldn’t forget it, for Pete’s sake.  Now I’m wondering – shouldn’t it be that “Hope has two beautiful parents”?  Wouldn’t that make more sense? That Hope is the result of Anger and Courage?  Will I be struck by lightning for questioning a saint?  Probably.  I warned you it gets busy in my head. My apologies to St. Augustine.)   

As the mother of child with multiple special needs and a vision processing disorder few people understand, I am familiar with anger.

The fundamentals we want for our children are that they are protected, capable, and educated to the best of their abilities.  Easy enough, right?  (Cue the hysterical laughter.  I’ll wait while you catch your breath.)

For parents like us, this includes the extra full time job of raising awareness and educating everyone we come into contact with that – say it with me – CVI is the #1 pediatric visual impairment in First World Countries.  

If you are familiar with anger as well, WELCOME.  You are in good company.

Anger is an energy.  (My apologies to Johnny Rotten.)  

Anger is a building block for Hope.

There is plenty to be hopeful about.

Conversations are happening between families and agencies in the blindness community.  These families are acting straight from the heart out of the all too common mixture of love and frustration we feel as we force  the world to recognize Cortical Visual Impairment and our children.

Soon, there will be a need to ask for more families to reach out, to ask questions, to make themselves and their stories known.

This growing group of parent advocates and TVI will be asking you to join us.  We will need you to reach out to agencies, legislators, and others to educate them about CVI, to let ourselves be counted, and to let them know that our children matter.

We will provide the information you need to feel well-equipped to share your stories.

I hope you will allow yourself to be included.

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This is where the courage part comes in.

You may not think that you want to be someone who will stand up and be counted.

I think that you already are.

Brene Brown, the author and  research professor widely known for her work studying courage, vulnerability, empathy, and shame, describes courage this way:

“Courage is a heart word.

The root of the word courage is cor – the Latin word for heart.

In one of its earliest forms, the word courage meant “To speak one’s mind by telling all one’s heart.”

“Speaking from our hearts is what I think of as ‘ordinary courage.’”

As a CVI parent, you operate from the heart every. single. day.  

Every time you make the attempt to educate a doctor or a teacher about CVI, you are speaking from your heart,  You are being courageous.

And, you are making it easier for the mom who will come after you.

Reading this post, researching online, following FB conversations, making D-I-Y materials to accommodate your child’s level of vision – all of these activities come straight from your heart.  Through love, you perform acts of courage every day.

Join us as we speak from our hearts, taking our ‘ordinary courage‘ to a wider audience.

ACT of COURAGE/ ACTION ITEM: 

Send your contact info – Name, Email Address, and State to info@cvimomifesto.com. 

Your information will go on a growing list of families facing the same challenges.  The information will not be given to any other agencies.  This is a mom fueled project.  We will use the information to keep you updated on future opportunities to advocate.